A recently implanted toddler came to our university clinic with his mother for aural rehabilitation. They were Amish, and, at the time, my knowledge of the community was very limited.
Figure. Ilene Elmlin...Image Tools
We treated the family as we would any other who came in for such therapy, assuming the child would attend the clinic for more than one semester.
Figure. Ilene Elmlin...Image Tools
The family had significant travel issues, though, and canceled a lot of appointments. The mother often remarked that she wanted her son to learn in a more “natural” setting. They did not return for a second semester, despite the clinician's recommendations.
I was disappointed that I did not guide the clinician more toward parent education. Teaching the parent to do at home what we were doing in the clinic and providing the necessary resources would have been much more beneficial.
Fast-forward several years, and I was given the opportunity to conduct hearing screenings on newborns in a local Amish community. Creating a successful screening protocol in a difficult-to-reach population is challenging, but key strategies make it possible.
Find a contact person who is willing to take responsibility for the screenings.
In my local Amish community, I was lucky to connect with a midwife. She knows when most of the babies are born and is a respected member of the community who can persuade others to be open to the idea of a hearing screening.
Finding out the name and contact information of the local midwife can be tricky. Local obstetrician–gynecologists and birthing hospitals are a good place to start. Although traditional medical settings are not the first choice of the Amish, they are utilized when the health of the mother or child is in jeopardy.
Increase your cultural competence.
In order to have successful interactions in a community that is different from your own, you must increase your knowledge of that culture. Do your research, and don't be afraid to ask questions. Take the time to learn not only the readily apparent differences, but also the subtle nuances of the communication style used.
Remember: location, location, location.
Find a central location that is convenient for families to reach. Most of the families I saw would go to the local midwife's house for a checkup shortly after the baby was born, and we tried to plan our screening days to coincide with the midwife's “clinic days.”
Plan your visits well in advance.
Getting the word out in a community that does not have telephones or Internet access takes time, and we wanted to make sure to test as many babies as possible at each visit. It took me almost two months to get our first visit scheduled in September 2012. Choosing a consistent day to come—in my case, the second Friday of every month—made it easier to plan and spread the word about the visits.
Be willing to do home visits.
Many families will have just had their babies and may not be up for the buggy ride with a newborn, particularly in cold weather.
It is helpful to have a member of the community accompany you on home visits to make the process more comfortable for the family. It is also extremely helpful to have someone from the community direct you to homes.
During my first visit to the local Amish community, I spent one hour driving on gravel roads looking for the midwife's home. After making several wrong turns and asking no fewer than 10 people, I finally found the road of the residence, which had no street sign. When you will be driving unaccompanied, it is always a good idea to ask for landmarks.
Figure. Ilene Elmlin...Image Tools
You may be testing a baby on a kitchen table or a single folding chair in a milk house. Your willingness to think outside the box will result in more babies tested.
Charge your equipment and bring a spare charged battery. There is nothing more disappointing than having babies lined up, ready to be screened, and realizing your equipment needs to be charged. Consider a battery-operated screener, if available.
On my first official screening day, I charged my otoacoustic emissions (OAE) equipment overnight, checked it before I left, and got to my destination only to find out that my equipment does not hold a charge for long.
My industrious midwife friend was not about to let this stop our screening. We went to the milk house, charged the equipment, and screened a few babies there. Between home visits, we returned to the milk house to charge the equipment. It took almost five hours to do four or five screenings.
Bring written materials.
Some families will accompany their babies to testing, and others will not. It is best to leave families materials that describe testing and results. Many state health agencies, as well as the Centers for Disease Control and Prevention, have materials available.
Include your contact information and recommendations with the materials. This might be the only contact you have with the family, and you want to make sure all provided information is clear.
Help schedule appointments with other healthcare providers if needed.
With limited access to phones and Internet, it can be challenging for an Amish family to make appointments with other healthcare providers, such as otologists and diagnostic audiology centers. Many families would be happy for you to make the appointments for them.
Keep an open mind.
I met several families who pursued hearing aids or cochlear implants for their children with hearing loss. It is best practice to provide information on all options, regardless of preconceived notions of what the family might accept.
The midwife I worked with has a son who has hearing aids and a grandchild with a cochlear implant. Her commitment to providing hearing screening opportunities for everyone in the community stems from her experience with late-diagnosed hearing loss in a child. She often expressed to me her feelings of guilt for not recognizing her son's hearing loss sooner.
Although her family's decision was to pursue technology, she is aware that this is not every family's preference. We worked together to provide information in a neutral way, allowing the family to make choices without pressure.
Give families practical tips for better communication with children.
We may only have one opportunity to interact with the families we see. It is best to share practical tips that will help family members provide an optimal environment for language development, regardless of children's hearing status.
These tips can be simple, such as getting a child's visual attention before speaking to the child, and keeping language simple and utterances short when the child is young and learning language.
Most important is that the family begins to work at making interactions successful. Since most Amish children will spend the majority of their waking hours with their mother, she should be prepared to be their best communication model.
Know the public and private agencies that assist those in need.
It is common for members of the Amish community not to have health insurance, making an audiological evaluation very pricey and, potentially, unattainable. Having information on hand about local support allows you to help families begin the process, increasing the chances that they will follow through with recommendations.
OUTSIDE OUR COMFORT ZONE
As healthcare professionals, it is our responsibility to provide service and education in our communities. This duty sometimes requires us to step outside our comfort zone and seek those who are unlikely to walk through our doors.
© 2014 by Lippincott Williams & Wilkins, Inc.